Saturday, December 24, 2016

A chaotic December meant I didn't do this last year, but I thought I should try to review this year, particularly as it featured such big chunks where I've been decidedly unwell, and there were so many things I wanted to do, had agreed to do or half-started that I then had to give up because of my deteriorating health. Before I started writing things down, it felt like there would be very little to say, but I did really quite a lot in the spring and haven't been completely idle since. This is going to read like a dreadful bragging Christmas Letter, but it's my birthday and this is mostly for my own sake.

I had started doing a bit of editing for the F-Word towards the end of last year, but I think it was at the beginning of this year that I officially became Features Editor. Then my health deteriorated and I had to give it up this summer, but it was a very interesting and satisfying experience - I had previously enjoyed the mechanics of editing other people's work, but the best bit was facilitating others to say what they wanted to say to a significant audience.

I model a winter lettuce - a woman with a lot of hair holds a lovely green lettuce as big as her head.

Early on in the year, I planted a load of vegetables. As the spring progressed into summer, my health meant things got a bit out of control, but those things that weren't killed off by neglect included tomatoes, lettuces, a small amount of pak choi (the caterpillars do love the stuff), radishes, baby sweetcorn (that was particularly good), peas, strawberries, French beans and runner beans. Oh and potatoes - lots of potatoes grown in sacks. I now have two table-height vegetable patches in the garden so I don't have to bend down.

I had written this article last December but it was published this year and I'm very proud of it.

We looked after a lovely old border collie for about a month, which was rather nice.

I have had a lump in my armpit for the past six months. After the first two, it triggered NHS Lump Panic, eight individual strangers got to see my naked breasts in one afternoon but it was all fine. All this happened at a time when I could really have done with a break, but the care I received at the Breast Clinic was extremely good. Do get your lumps checked out.

I model the mermaid's tail - an enormousmermaid reclines in a wicker chair with asomewhat seasick expression on her face.

I made a mermaid's tail sleeping bag for my niece. I scrapped an earlier attempt because it was a bit too small - at least, a four year old would grow out of it in no time. The finished version should serve her well if she is still interested in being a mermaid into middle age.

I wrote quite a few blog posts and a couple of features for the F Word in the first half of the year. My favourite is this about women who, by virtue of being disabled, old, fat etc. are considered sexually and romantically unattractive by our culture.

I drove a car! I have had a provisional license for a few years, but this year, on one occasion, I actually drove. It was awesome!

It was the twentieth anniversary of my becoming sick in August, so I wrote a series of posts about chronic illness and coming to terms with loss. As, if you're reading this, you are almost certainly aware.

I have been writing and editing fiction. Just not nearly as often or as enough as I would like.

In the midst of everything, they happened to discover that I was very deficient in Vitamin D. I've now got an evangelical zeal about telling folks who also might not get out much that they should get their Vitamin D checked. However, I am too polite to give unsolicited health advice, so this may be the only time I ever mention it.

Purple Prose, a book about being bisexual in the UK was published. It includes some of my words as well as the words of far more interesting and brilliant people.

My Dad retired, which has been absolutely great. His work was stressful and now he is not only very much more relaxed, but we see a lot more of him and have had some modest adventures together.

I had lessons in the Alexander Technique to improve my posture, which is something I have fancied doing for years. Of course it hasn't fixed anything, but it has dramatically reduced certain kinds of pain in my back.

Snuffles the hedgehog - a fluffy brown hedgehog eats froma dish of mealworms. She was one ill-tempered hedgehog.

We installed a camera to watch the garden after we'd gone to sleep, to monitor the full extent of hedgehog activity. We saw a lot of hedgehogs and one night, a tawny owl landed in the garden and sat down with one of the hedgehogs to have a meal.

Stephen acquired a tabletop game called Zombicide, where you go round killing zombies with dice rolls. This turned out to be tremendous fun and we have spent several happy evenings liberating prison blocks from the zombie hoards.

We saw a little more of our nephew and niece this year and had some really good times with them. They are both fantastic children and so much fun to be around.

A young blackbird - a brown bird with pronounced beak andspeckled breast, sitting in a bush with white flowers.

We think at least one hedgehog was born in the garden this year, as were some sparrows and a blackbird (left). This chap startled me when I was trying to see if he was still in the nest.

Politics has been pretty grim. The world's progress towards being a more peaceful, freer, happier, healthier place - which has been considerable, even in very recent times - is in grave danger of stalling. A very great number of good folk have brought that progress about through hard work and I hope, a similar effort by very many people in both big and small ways will get us back on track. That may sound a bit crass amid all this light personal news, but like a lot of people, politics has been deeply personal this year.

We managed to get to the theatre for the first time in a few years to see the Cambridge Greek Play do Antigone and Lysistrata. The latter was particularly brilliant, satirising the ongoing political nonsense and with songs in Ancient Greek we were all invited to sing along with.

Two happy people at a picnic bench with a field in the background.

As everyone knows, Stephen is an amazing person, but he has been particularly heroic this year. We've always performed care for one another in ways which merge with everyday kindnesses and physical expressions of affection, but this year the work of keeping us going has shifted very heavily onto his shoulders. While it has been tough, we have not only survived, but we've often had a great deal of fun.

It's been a very difficult year for several of our friends and family; other people have had major health crises, bereavement and money worries, as well as the personal effects of the year's disastrous political events. Thus I come to the end of 2016 with a heart full of love and hope that next year is much much better and brighter for those who have had to battle through to this point.

I hope that anyone who actually read down this far has a wonderful, peaceful holiday season whatever you're doing with it and a very happy New Year.

Friday, December 16, 2016

[Content note: This post has a lot about status-anxiety and thus issues of self-esteem and the judgement of others. Passing reference to diet talk.]I managed to do the audio for this but it's not brilliant:
If you cannot see the audio controls, your browser does not support the audio element

As I've mentioned in
previous posts, the Kubler-Ross stages of grief are not about a fixed
and inevitable sequence. They are merely common experiences which are
likely to happen in this approximate order following loss. However,
with chronic illness as with other dramatic and complicated losses,
we are very likely to revisit earlier stages.

This is the bad news
about acceptance; the first time we feel that we've accepted our loss
is undoubtedly a breakthrough, but this is very unlikely to be
something that happens once and forever. This is partly why I've been
writing about loss and chronic illness a full twenty years since I
first got sick. I have absolutely come to terms with what happened
back then. I sometimes have to come to terms with what is happening
now.

Our dominant triumph over adversity narrative means that those stories about chronic
illness which aren't about the search for a cure or heroically
raising Awareness are usually about spectacular reinvention: Chronic
illness ended my career as a stock-broker but now I'm building a
million pound empire by hand-knitting mushroom-warmers.

Reinvention is
inevitable but the creation of a new life which somehow mitigates all
the problems associated with chronic illness is unlikely. It's a very
rare chronic illness which doesn't fluctuate over time. Some are very
likely to deteriorate. Some have a good chance of improving to some
extent, which is not a straight-forward prospect either. Life
circumstances can and probably will change in a way that draws loss
back into focus.

It may be you find
peace, comfort and creative fulfilment in spending your days
hand-knitting mushroom-warmers. But this could happen without making
a penny and there's no realistic prospect of replacing a
stock-broker's income. It won't get you out of the house or provide
the interactions or social standing associated with your previous
work. Plus, despite the relative low pressure, knitting good-quality
items and selling such knitted items is neither effortless,
stress-free nor unaffected by fallow periods.

By definition, chronic
illness can't be fixed. But having come to terms with that, it is
vitally important to recognise that the life-changing effects of
chronic illness cannot be magicked away either. My previous posts
have been about how our disablist culture makes it so much more
difficult to move through stages of grief when we become chronically
ill. This post is about making sure we don't replace all that with
some other equally futile struggle imposed by a culture that doesn't
want us to let go of this particular kind of loss.

For the first ten or so
years of my illness, my energy was focussed on a sequence of rather
unhelpful questions:

How can I regain my
health?

If I can't regain my
health, how can I complete my formal education?

If I can't complete my
education, how can I make money when I'm too sick to work?

If I can't make money,
how can I stop other people thinking I'm a waste of space?

Ultimately, for me, the
answer was the same in every case. At 35, I am in worse health than
in my late teens, I have just 3 GCSEs to my name and I've been
dependent on benefits my whole adult life. Various adventures in
higher education came to nothing. I am occasionally paid for my work
but could never do enough to regularly supplement my income, let
alone replace the state benefits I receive. We live in a culture
where a successful person is generally understood to be someone with
a well-paid fulfilling job. By that measure, I am a complete and
utter failure.

Of course, I am not and
nearly nobody thinks I am. But we do need to talk about status.

Small children are told
not to compare themselves with others, but then schools, advertising
and often even their parents will ask them to do just that. This only
increases as we get older, as we are sold the political myth of
meritocracy; the idea that how rich, successful, beautiful and
healthy people are is a reflection of their virtues and personal
efforts. Or perhaps worse; the idea that this should be the case and
if we're not as rich, successful, beautiful and healthy as we deserve
to be, then something has gone drastically wrong – either with
ourselves or with other people.

People with chronic
illnesses don't live apart from our status-anxious society, and
circumstances – isolation, frustration, time on our hands – can
make status-anxiety even worse than for folks who are busy getting on
with other things. The whole game is rigged, but we have even less
opportunity than most to even take a punt.

Even folk who are able
to work with chronic illness are acutely aware of the scrounger
rhetoric which might be applied to anyone who is not functioning at a
hundred percent. We hear about the “hard working families” for
whom politicians claim to speak (so not us?), as well as receiving
the steady drip of advertising and aspirational TV where the most
valuable people are wealthy healthy consumers. Even cultural advice
around health is status-based; there's a reason New Age magazines
promote total silence (bad news for most human brains) as necessary
for “true rest”, why newspapers focus on exotically-grown produce
your gran never heard of as health-giving foods, when all their
nutrients can be found in cheap local veg and cereals. Health is
about status too and there's cultural capital to be gained in looking
after yourself expensively and elaborately.

Added to this are the
dominant stories of tragedy and triumph over adversity which are told
about people like us, the supercrip image of every disabled person we
see on TV who is neither a villain nor an object of pity. They are
geniuses with mental illness, they are blind pilots, they are
wheelchair-users who climb mountains. It's bad enough that we can't
possibly keep up with our peers, can't work as much as them, can't
earn as much, can't do as much in any regard and have far more
limited choices around family and relationships. If we start
comparing ourselves to the most visible disabled people within our
culture, we're in even more trouble.

Of course, we rarely
talk about this stuff explicitly; we don't acknowledge the race, so
it's hard to come to terms when you have well and truly fallen out of
it.

I've not entirely
sorted myself out with status. Working makes me feel good. But
interruptions to that are frustrating to me not only because I can't
do the thing I find uniquely enjoyable and fulfilling. Nor is it even
the lack of feedback, which matters too – few people write only for
the page. The less I write, the less I feel like a writer. The less
paid work I do (which isn't much at the best of times), the less I
feel like a writer. The more slowly I move towards getting a novel
published, the less I feel like a writer. And of course my identity
shouldn't hinge on being any one thing, but there's part of me that
feels that if I am not a writer, I am not anything; I am without
value. Which is nonsense and I know it.

I know other people who
are able to do even less of the things they are passionate about, or
people whose health is much better than mine who lack such a central
focus. I don't for a moment think less of them; I know I'm extremely
lucky that writing was always there. But this is the nature of
status-anxiety; we anticipate judgement in situations where we'd
never pass any ourselves. Just the other day, my Mum explained her
nervousness about a couple of upcoming social events, in terms of her
being “just a school secretary”. She explained that being in her
sixties and still working for the kind of pay that a school secretary
receives suggests someone who lacks the ambition, drive and
intelligence to get further and do something more impressive.

So I said, “If you
imagine other people think that about you, what do you imagine people
think about me?”

And of course, she
didn't imagine anyone would turn their nose up at me or any of her
friends or family members who are out of work, or who work as
cleaners or in supermarkets; she would be positively outraged at the
suggestion that any of us were in these positions because we lacked
ambition, drive or intelligence. We apply a different standard to
ourselves, but every time we vocalise this unexamined, we risk
raising the unrealistic standards of those around us.

One of the biggest
problems is that disabled people are conditioned to explain ourselves
to others in much the same way we would explain ourselves to doctors
or the DWP; there's a reason why we answer rude questions when others
would not. I have heard friends explain their conditions and their
work/benefit status to strangers in all kinds of circumstances where
people didn't need to know about either.

Of course, people
respond to the information they're given. If you tell someone you're
a jet pilot, they will talk to you about planes and travel. If you
tell someone you have Lupus and haven't worked for five years, they
will come up with an anecdote about an uncle who had Lyme Disease (it
begins with L, after all), a deeply personal question about your
condition and a suggestion for work they imagine you might be able to
do because it doesn't involve a lot of standing up.

This is bound to make
you feel fairly crap about yourself, and reinforces the idea that you
are set apart from other people, from some mythical normal world of
health and success.

I imagine this is made
even more difficult for firmly middle class sick people who don't
meet any of the millions of working people who readily avoid talking
about their jobs because they're either boring or unpleasant (some
wealthier people have rubbish jobs, but they're handsomely paid and
respected for the tedium). For perhaps the majority of working
people, even when it's reasonably enjoyable and fulfilling, work
doesn't reflect who a person is, but merely what they do on weekdays
to pay the bills.

It is not that people
with chronic illness should be ashamed of anything – our health,
our work status or anything else - but there's much to be gained from
presenting ourselves as who we really are, what we really do, rather
than starting all interactions with the excuse we have for not being
like other people.

There's one of those
inspiration porn memes which features an amputee child running on a
race track with the slogan, “What's your excuse?”

And of course it's
silly and offensive in ways that don't need to be covered here, but
there's a tiny part of me which responds, “I have an excuse. Do I
need to let anyone know about that?”

Some people feel they
do. As mentioned in my Sadness post, I have come across folks who
perform the role cast to them as unfortunate ill person, motivated
in part by the mistaken belief that the bullying and skepticism
disabled people face is due to ignorance, and enough information can
put everything right. I'm not talking about folk who merely discuss
their health or even complain about it a lot, but the chronic illness
equivalent of those women who perform motherhood – not just talking
about or referring to the experience, but placing every topic of
conversation within that context, vocalising the most mundane aspects
of it, demonstrating how they're doing the right thing (often
elaborately and expensively) at all times. Either involves a lot of
generalisation; motherhood feels like this, life with chronic illness
feels like that. And while the performance of motherhood tends to
exude positivity – it's the toughest job in the world but the most
rewarding! – the performance of chronic illness is about suffering;
it's just the toughest damn job in the world.

It is an ongoing sick
note to the world and of course, that answers the issue of status: I
would be doing amazing things if I was not ill, but instead I'm doing
an amazing job of being ill, fighting it and documenting it to
inspire and inform others. And this can be really difficult for the
rest of us to be around.

It contributes to a
culture where disabled people are defined by our impairments and
non-disabled people believe they have a right to expect a moving and
detailed account of our lives and suffering – non-disabled people
get to keep the power. Bullies get to keep on bullying.

Yet beyond this, even
though I am acutely conscious of these politics, when I meet with
such performances, I find myself doubting my own perspective on
illness. I've always managed to be reasonably upbeat but at this
point in my life, I find myself particularly blessed; I am married to
Stephen, I have some great friends, my family relationships are the
best they've ever been, I love my home which has a garden and the
garden has hedgehogs living in it. I have some big health-related
frustrations impact on my work – especially this year – and
upsets and worries occur from time to time, but otherwise, I'm really
enjoying my life.

Stephen has always
enjoyed the Eurovision Song Contest and because I'm so cool, the
first time I watched it with him, I kept thinking, “I can't be
enjoying it this much. Not really. There is nothing cool about this.
Maybe I am only enjoying it ironically?”

And in the same way,
when confronted by people whose mission it is to let the world know,
in all their interactions, how an illness like the one I have has
ruined their lives, there's a part of me that thinks, “Maybe I'm
kidding myself? Maybe it is impossible to be as content as I think I
am?” After all, these folks have much of our culture on their side;
we're not supposed to be happy.

But louder than that,
there's a part of me which thinks, “Maybe other people think badly
of me, because I don't do this stuff. Maybe when I'm not around for a
while, people just think I don't care about them, that I'm busy with
other things. Maybe people look at how little I achieve and assume
I'm just lazy. Maybe people think I'm a scrounger. Maybe people think
I don't look after myself properly because I don't detail all the
boring ways I look after myself.”

And of course, this is
why people do this stuff in the first place; this performance of
illness is, to some extent, what our culture expects of us. If I was
a character in a book or a film, the first thing you'd know about me
was my medical history; my character or people close to me would
discuss it at length. You would see me gritting my teeth in pain,
taking medicine, lying about looking unwell and so forth. You would
see this because my character would be all about pathos; my illness
would function as a reason to feel sorry for me and for those who
care for me.

In the face of
oppressions, big and small, some folk imagine that sympathy will hold
back the dogs. In reality, there's no way round the fact that some
people will pass judgement on me given the society I live in. It's
very rare these days that anyone expresses anger towards me, but when
they do, they always manage some snide remark about my health or the
way I manage it. No amount of information is ever going to shut that
down.

Avoiding these kinds of
people and this kind of thinking is as essential to acceptance as
avoiding folks who constantly talk about how fat and hideous they are
and what diets they're on when you're trying to feel okay about the
size of your bum.

The question I should
have asked much sooner than I did was

How can I live the best
possible life I can within what limitations I have?

Which sounds obvious
and easy enough, but is in fact a tremendously complex question. It
demands we look at what our actual limits are - and not in a
pseudo-existentialist, the only limits are the ones we impose upon
ourselves kind of way. Our health is not only a limitation, but
most likely a changing limitation. We all need some money so we need
to source this, whether through a new way of working, wrestling the
benefits system, relying on a working partner or finding some kindly
eccentric benefactor. We need food, clean clothes and to live in a
reasonably sanitary environment, so we need some way of making sure
that happens. If we are a parent or a carer, we need to make sure
that parenting or caring carries on. All these limitations are real,
often quite messy and prone to change even when our health doesn't.

And then there's the
matter of what is best. If there's any left after we have secured our
basic maintenance, what should we spend our time and energy on? The
thing that's most fun, the thing that's most fulfilling, the thing
that's most useful to the world or the thing which makes us most
comfortable materially?

Of course, these are
not chronic illness questions, but being alive questions. Everyone
has limitations. Everyone. Some people undoubtedly have much easier
lives than you or I, but very many people who don't have chronic
illness nevertheless face a lot of limitations and complexities on
their particular journeys through life.

There's a tendency for
people with chronic illness to feel set apart from some mythical well
world where everything is straight-forward and I understand that –
I have had conversations with friends and family where it's taken me
less time to say what I've been up to in a month than they take to
report on a single day.

However, acceptance
means moving on from the sense that our little piece of the world has
stopped turning while everything else carries on like nothing's
happened, that sense that separates us from those with different
experiences. In the same way, when we finally come to terms with a
death, the imposing sense of that empty chair eases; the chair
remains empty, but it no longer dominates the room.

Again, this is
complicated by the fact that acceptance isn't a happy ending we
arrive at just once – with chronic illness, we are likely to
experience loss again, our world will once again stall on its
rotation. But having reached acceptance already, it gets easier to
ride out our inclination toward denial, anger, bargaining and sadness
and get it turning once again.